3/14

We had a quiet day with minimal interruptions. It was nice.  Ethan slept until 11:30 am.  He relaxed and really enjoyed his quiet time playing the play station. 

I have decided to just go ahead and schedule the fistula surgery. Ethan made 5 ml the entire day. Ethan’s kidney and I are in a fight. We are not on speaking terms until it decides to do what it is supposed to do. 

I also found out that once we go to outpatient dialysis that we will have 90 days to get the fistula surgery done. This is because the vas cath (which is what they currently use for dialysis) is a risk for infection. It takes 12-16 weeks to heal.

The plan is to move forward to rehab likely this week. It will be inpatient rehab so he only leaves for dialysis as well as his doctor appointments.

We will be traveling from rehab back to the hospital for all of his follow up care as this team will continue to follow him for several years. The first month out of the hospital we will be returning weekly. Our visits will be bloodwork with EKG and exam. The second month out with be every other week visits with the same goals as month one. He will get an echo once a month until November as well as biopsy once a month.

We will pair these cardiology visits with renal appointments as if we move forward with transplant, they work closely with the heart transplant team and make sure his medications play nice etc. plus a bonus is they already know him inside and out.

It would be nice to go to rehab closer to home, but after much thought, it is in humane to throw Ethan in the car for that long of a ride when he is weak and recovering. This will be a short jaunt to the hospital. This decision wasn’t made lightly. It was made with Ethan’s well-being put first. He was also part of the decision and also agreed he would not like the excessive traveling. Ethan is involved with most decisions.

We visited our 9 Tower friends again today in the afternoon and then again the night crew around 8:30 pm.  The night crew hasn’t seen him walk yet. He surprised them all when he strolled in. They were also surprised at how tall he was. Ethan hugged his nurses as he heard stories about how this nurse did his CPR and that nurse was the one he flipped off (which he apologized for).

I looked at the time and it was a little past 9:00 pm. We got off the elevator and Ethan’s nurse was standing right there. We were read the riot act because she didn’t know where we went and we were late for 9:00 pm meds. She had tried to call me but I had my phone on silent, in my back right pocket. I have some numbness in my right butt cheek from all of my herniated disc issues. I have some permanent nerve damage. Totally didn’t feel the vibration at all. Oops.  I then explained to her all about my butt cheek issue and made it 10 times more awkward.

After a good dose of shaming, I gave Ethan his meds, got him bathed and in bed. It was a relaxing day.